(This is part of the Brejcha Personal and Disability Resource Site, and after reading this page you can Click here for a Menu . But for now, Welcome to my:
------------------------------------------------------------------------------------
Note: This was first published in the March 3, 2004 issue of Metro, Philadelphia's excellent new daily newspaper distributed free.
(Changed by the editor to "Professionals must listen to the patients")
©2004, F. Alexander Brejcha.
This column addresses two seemingly disparate issues, but ones that are linked in how professional inattention can hurting the very people who are supposed to be cared for. The issues are dyslexia and occasional medical unwillingness to accept a patient’s awareness of his or her own condition - or the knowledge of parents/guardians. These subjects both stem from problems encountered by two of my personal care attendants I am fortunate to have, courtesy of United Disabilities Services of Lancaster. I am paraplegic (since 1985) and it is only through UDS that I am able to continue working my full-time night shift job of twenty-four years at the wonderfully handicap-accommodating Graduate Hospital where I am lucky to also be able to work on my writing sideline.
I'll begin with dyslexia as this is a condition which is all too often being ignored. All through childhood and adolescence, my one attendant – who is my age - was being told that she was retarded and shoved off in classes for the learning disabled. In actuality, she is a very intelligent, compassionate, and hard-working woman. Her only problem is that letters and numbers do not line up right in her mind. She has a difficult time with written material and tests. According to the International Dyslexia Association (http://interdys.org), approximately fifteen to twenty percent of the population has a reading disability, and of those, almost eighty-five percent have dyslexia. Because dyslexia is difficult to recognize and requires early and intensive intervention, it is much easier to simply apply a “stupid” label early. However, not only does this stigmatize and isolate a child, but it prevents them from reaching their adult potentials.
However, as damaging as dyslexia can be, it is not deadly - but medical inattention can be.
One of my other attendants has an adult daughter with severe asthma problems that sometimes requires an emergency room visit to a small suburban hospital near her. On several occasions the emergency room staff there has insisted on giving her the very medicine which she is allergic to. She tells them of her allergy, as does her mother - and it is clear in her records. But warnings aside, she keeps being given the very medicine that could kill her, despite her protests and those of her mother. And not surprisingly, she immediately begins exhibiting signs of anaphylactic shock with even greater difficulty breathing and other symptoms.
These two problems share common causes that need to be addressed. One problem is time. Teachers are forced to deal with too many students at once, and emergency rooms are often forced to deal with multiple emergencies at once which have to be treated in order of urgency. A gunshot wound for instance, requires immediate attention from multiple people, while a person with an asthma attack is very easily shuttled off to the side with a standard treatment which normally is effective and appropriate, but administered by a nurse or respiratory therapist who may not be used to patients sensitive to standard treatments. Where I work, before any treatment is administered, questions about allergies are always asked, but apparently that is not as universal as I presumed.
The other problem is that professionals are used to being in charge and dictating solutions to problems. And the longer in charge, the less likely they are to admit that they may have to modify their approach with a particular patient or student with different needs. And compounding the problem is the fact that the very people who need to speak up and demand better attention, are often conditioned to believe that a “white coated “or “bespectacled” authority figure knows what's best for us.
Professionals need to listen and pay attention, and patients and parents need to speak up!
=======================